31 Dec 10
Our church held a watch-night service at it's main office at new year's eve. Seeing that Charlene was awake in the evening, we decided to bring her to watch-night service. We were fully prepared to come back early of Charlene was not cooperative/ crying too much. We prayed to the Lord that He bless Charlene with peace and calm.
Charlene was at first crying when we stepped into the main office. But when the songs and worship started she quieted down. Though we had to evacuate to an other room, we managed to stayed throughout the whole service.
This is the first time our family attended a watch-night service. To be able to spend the last moments of 2010 and first moments of 2011 in the abode of the Lord as a family was something we were very grateful for. We thank God for his mercy and grace.
Friday, December 31, 2010
Sunday, December 26, 2010
26 Dec 10
26 Dec 10
After Charlene had been discharged, she had been sleeping in the day and awake at night (1am - 5am).
This early morning, once again she woke up crying,vomiting poo-pooing. While carrying Charlene around, Charlene actually left a trail of shit on the ground. And Dez actually only realized it after stepping on it. Haha.
After Charlene had been discharged, she had been sleeping in the day and awake at night (1am - 5am).
This early morning, once again she woke up crying,vomiting poo-pooing. While carrying Charlene around, Charlene actually left a trail of shit on the ground. And Dez actually only realized it after stepping on it. Haha.
Friday, December 24, 2010
24 Dec 10
God is Good!
When Charlene was first admitted, we prayed that God will help Charlene to recover quickly so that we can spend Christmas together as a family out of the hospital.
Today, Charlene is discharged. She did not vomit and was able to tolerate her feeds well. Thank God that after all her anti-convulsants were given, her fits reduced from 23 (on the 22nd when she was only on 2 anti-convulsants) to 6 (on the 23rd). Somewhat back to her baseline? We will continue to pray that Charlene's fits be taken away from her life.
We decided to sing Christmas carols together to Charlene. She was quite upset and began to whine. After I told Dez to stop singing, Charlene slept soundly and did not complain while I continued to sing "Silent Night". Haha, she doesn't like Daddy's singing.
When Charlene was first admitted, we prayed that God will help Charlene to recover quickly so that we can spend Christmas together as a family out of the hospital.
Today, Charlene is discharged. She did not vomit and was able to tolerate her feeds well. Thank God that after all her anti-convulsants were given, her fits reduced from 23 (on the 22nd when she was only on 2 anti-convulsants) to 6 (on the 23rd). Somewhat back to her baseline? We will continue to pray that Charlene's fits be taken away from her life.
We decided to sing Christmas carols together to Charlene. She was quite upset and began to whine. After I told Dez to stop singing, Charlene slept soundly and did not complain while I continued to sing "Silent Night". Haha, she doesn't like Daddy's singing.
Thursday, December 23, 2010
23 Dec 10
This morning, our cell group friends (Wendy and Alicia) came to visit Charlene. While I was talking and describing how Charlene would respond to positive comments and praises of her, Charlene started smiling happily. And she continued to smile happily for the next 5 minutes. My friends and I were delighted and praise the Lord for His goodness!
Staff nurse Cindy (the neurologist's nurse) came and saw Charlene smiling. She was really delighted too and said that it was the first time she see Charlene smile so happily. Charlene was always giving her the black face and frowning.
I am so happy and engrossed in seeing Charlene smile that I didn't take photos or video.
Charlene is doing well and is tolerating her feeds well. The doc said that if she doesn't vomit, she most likely can be discharged tomorrow.
Lord, we thank you for Charlene's speedy recovery and pray that our family can celebrate Christmas together at home.
Staff nurse Cindy (the neurologist's nurse) came and saw Charlene smiling. She was really delighted too and said that it was the first time she see Charlene smile so happily. Charlene was always giving her the black face and frowning.
I am so happy and engrossed in seeing Charlene smile that I didn't take photos or video.
Charlene is doing well and is tolerating her feeds well. The doc said that if she doesn't vomit, she most likely can be discharged tomorrow.
Lord, we thank you for Charlene's speedy recovery and pray that our family can celebrate Christmas together at home.
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| Our best picture of Charlene's 'smile' thus far... |
Wednesday, December 22, 2010
22 Dec 10
The doctors came at 9am and saw that Charlene's gut has more or less cleared - no traces of bile. They gave instructions to resume feeding slowly. After 2 hours, Charlene was still not fed and I went to ask the nurse. Apparently, the nurse did not know. The docs did not tell her verbally and the nurse obviously did not read the case-note. And then the most ridiculous thing happened. The hospital run out of Enfagrow milk and the nurse asked me to go to the retail pharmacy to buy. And after I failed to get any, I have to tell them what to do (if not they might just conveniently not feed Charlene).
Thank God for the helpful nurse manager and the dietician who sorted things out and ensured Charlene can get her milk (the dietician say can use Gain IQ, not much difference).
And then despite instructions given at 9am that feeding can be resumed, Charlene was still not given all her medications and her fits were still every hourly. Finally at 6pm, I went to ask the doctor why she was not given medication and only then the doc told the nurse to do it.
After all of Charlene's anti-convulsants went in, her seizure frequency began to fall.
Thank God for the helpful nurse manager and the dietician who sorted things out and ensured Charlene can get her milk (the dietician say can use Gain IQ, not much difference).
And then despite instructions given at 9am that feeding can be resumed, Charlene was still not given all her medications and her fits were still every hourly. Finally at 6pm, I went to ask the doctor why she was not given medication and only then the doc told the nurse to do it.
After all of Charlene's anti-convulsants went in, her seizure frequency began to fall.
Tuesday, December 21, 2010
21 Dec 10
Charlene is admitted again, this time for vomiting of bile.
We sent her in as she vomited 7 times from 6pm on 20/12 to 3am. Vomiting of bile can be quite serious and Dez was concerned that it might be bowel obstruction. We thank God for keeping us awake so that we were able to monitor Charlene and granting us the discernment to send her in asap. We also thank God that the X-Ray films did not suggest any bowel obstruction.
The doctor rested Charlene's gut (no food and fluid intake) and put her on drip. Poor Charlene has such small and narrow veins and so chubby that the doctors failed many many times (ER doc failed 3 tries, Ward doctors failed at least 6 times) before they finally could insert a proper plug. By then, after many hours of no fluids, Charlene was so pale that she didn't even had energy to cry. She just drifted in and out of sleepiness.
But after the drip went in, she had more energy and her colour came back. And she finally had energy to cry and whine. We are glad to see her back to normal, even though its harder to take care of her.
The doc is suspecting stomach flu related (viral infection in gut). It is a good thing that Charlene's stomach is clearing up and there isn't too much bile coming out. Hopefully, she can start feeding and not vomit tomorrow.
However, cos she couldn't have her medicine, her fits came back in full force...
Lord Jesus, we pray that you will protect Charlene.
We sent her in as she vomited 7 times from 6pm on 20/12 to 3am. Vomiting of bile can be quite serious and Dez was concerned that it might be bowel obstruction. We thank God for keeping us awake so that we were able to monitor Charlene and granting us the discernment to send her in asap. We also thank God that the X-Ray films did not suggest any bowel obstruction.
The doctor rested Charlene's gut (no food and fluid intake) and put her on drip. Poor Charlene has such small and narrow veins and so chubby that the doctors failed many many times (ER doc failed 3 tries, Ward doctors failed at least 6 times) before they finally could insert a proper plug. By then, after many hours of no fluids, Charlene was so pale that she didn't even had energy to cry. She just drifted in and out of sleepiness.
But after the drip went in, she had more energy and her colour came back. And she finally had energy to cry and whine. We are glad to see her back to normal, even though its harder to take care of her.
The doc is suspecting stomach flu related (viral infection in gut). It is a good thing that Charlene's stomach is clearing up and there isn't too much bile coming out. Hopefully, she can start feeding and not vomit tomorrow.
However, cos she couldn't have her medicine, her fits came back in full force...
Lord Jesus, we pray that you will protect Charlene.
20 Dec 10
Today, Charlene had her Mic-Key button changed. The valve was a little stuck and the nurse thinks it is about time to change a new one as we had used the old one for 8 months which was a long time for a Mic-Key button (typically can only last 3 months).
After feeding Charlene and resting for a while, we went home in a cab. While the cab was turning into carpark, Charlene started vomiting and turning purplish. Thank God she recovered and did not choke on her vomitus which was in her mouth. She vomited out undigested milk and some dark yellowish thingy.
After bathing Charlene, I fed her potassium bromide (which was only about 10ml) which she vomited out almost immediately with the dark yellowish thingy again. At 9pm, Dez started feeding her milk which she vomited out with the dark yellowish thingy again.
I went to sleep at 10pm without closing the room door. And strangely, Dez did not close the room door for me (which he normally does). At 12midnight, I heard Dez telling his Dad that Charlene vomited but was too tired to wake up.
At 2am, I heard Dez shouting for his Dad saying that Charlene has vomited and I dashed into the room to see a pool of dark yellowish puke. I told Dez that Dr Natalie once told me that the dark yellowish thingy is most likely bile. After a quick Google search, all results tell us to bring to Emergency Room immediately.
After feeding Charlene and resting for a while, we went home in a cab. While the cab was turning into carpark, Charlene started vomiting and turning purplish. Thank God she recovered and did not choke on her vomitus which was in her mouth. She vomited out undigested milk and some dark yellowish thingy.
After bathing Charlene, I fed her potassium bromide (which was only about 10ml) which she vomited out almost immediately with the dark yellowish thingy again. At 9pm, Dez started feeding her milk which she vomited out with the dark yellowish thingy again.
I went to sleep at 10pm without closing the room door. And strangely, Dez did not close the room door for me (which he normally does). At 12midnight, I heard Dez telling his Dad that Charlene vomited but was too tired to wake up.
At 2am, I heard Dez shouting for his Dad saying that Charlene has vomited and I dashed into the room to see a pool of dark yellowish puke. I told Dez that Dr Natalie once told me that the dark yellowish thingy is most likely bile. After a quick Google search, all results tell us to bring to Emergency Room immediately.
Sunday, December 19, 2010
19 Dec 10
19 Dec 10
Zs and Nana visited us and Charlene today. It's been about a year since we have last met the 2 of them.
Typical of Zs, he took photos of charlene.
Here are some of the photos he took...
Zs and Nana visited us and Charlene today. It's been about a year since we have last met the 2 of them.
Typical of Zs, he took photos of charlene.
Here are some of the photos he took...
Saturday, December 11, 2010
Charlene's new clothes part 2
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| Charlene in her bob dog's outfit |
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| Charlene as a bumbee - Aunty June's 'nightmare' came true... |
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| This is just Daddy's artistic photo |
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| And finally, Charlene as Barney... |
Charlene in her new chair
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| First: "What's this new sensation?" |
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| Second: "I want to be carried~ wah!" |
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| Third: "Eh... the chair is comfortable..." |
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| Fourth: "zzzzz~...." |
Thank you Aunty Audrey and Uncle Vincent for the useful Christmas present!
Friday, December 10, 2010
10 Dec 2010
Today, we went to see Dr Natalie, Charlene's pediatrician. I updated her on what had happened to Charlene over the past 3 months. Dr checked her n discovered that Charlene is v constipated; golf balls of poo poo in her stomach. Charlene also had 3 ulcers in her throat. Coupled with yellowish phlegm n an unknown blister on her index finger, Dr decided to give her anti-biotics.
Charlene was also given multiple- vitamins. Previously, when I asked the dietician and other doctors, they keep saying she doesn't need anything other than milk. Charlene's teeth are not coming out but her gums n tonsils are fine. N a stiff portion of her right leg was 'diagnosed' as fat. Hahaha.
Dr Natalie is a godsend. She is always so helpful n responds to my SMS quickly. We thank God for blessing us with a good doctor.
Charlene was also given multiple- vitamins. Previously, when I asked the dietician and other doctors, they keep saying she doesn't need anything other than milk. Charlene's teeth are not coming out but her gums n tonsils are fine. N a stiff portion of her right leg was 'diagnosed' as fat. Hahaha.
Dr Natalie is a godsend. She is always so helpful n responds to my SMS quickly. We thank God for blessing us with a good doctor.
Sunday, December 5, 2010
5 Dec 2010
After Friday's experience, we decided to put Charlene in her pram and pushed her to church service. Charlene was looking around in her pram. She was attentive throughout worship n slept during sermon. We are thankful that Charlene is so well behaved and that we could renew ourselves in the Lord.
Friday, December 3, 2010
3 Dec 2010
We decided to put Charlene in the pram and pushed her to the bus stop. Charlene was quite sleepy. She looked around for a while n was dozing off. Seeing that she was quite ok in the pram, we decided to walk to our cell leader's house which is one bus stop away. Charlene slept n was awakened when the ride was too bumpy. It was the first time we were able to take a stroll together as a family n we thank God for this.
Saturday, November 27, 2010
27 Nov 2010
I would like to thank my 3 friends; Audrey, Wanfen and June who made time to spend the afternoon with me to celebrate my birthday. They treated me to good Japanese food and high tea. I needed the break to get some normalcy in my life.
Thank God that Charlene was a good girl to her Daddy and grandma while Mummy is away enjoying herself.
Thank God that Charlene was a good girl to her Daddy and grandma while Mummy is away enjoying herself.
Tuesday, November 23, 2010
Charlene had been crying consistently for a month.
When we said crying, we mean the uncontrollable, inconsolable type. No matter what we do, we can't comfort her and stop her from crying. We change her diapers,change her gauze, put her in prone, pat her, rock her, massage her forehead, put lotion on her, cover her with blankets, turn up the fan, sing songs... Nothing really works.
The worst is that she cries as long as she's awake. If she's awake for 5 hrs a day, she cries for 4 hrs. We might distract her from crying for 5 mins, then she starts crying soon after.
The incessant crying is driving us nuts. We and my mother-in-law had lost patience with her a few times and scolded her. Though we know it's not her fault.
We prayed and are praying. Lord, pls bless us with the patience and strength to endure this period of affliction. Pls take away Charlene's discomfort and make her calm and alert. We thank the Lord hat the seizures have been very much reduced from 12-20 a day to 1-2 a day.
When we said crying, we mean the uncontrollable, inconsolable type. No matter what we do, we can't comfort her and stop her from crying. We change her diapers,change her gauze, put her in prone, pat her, rock her, massage her forehead, put lotion on her, cover her with blankets, turn up the fan, sing songs... Nothing really works.
The worst is that she cries as long as she's awake. If she's awake for 5 hrs a day, she cries for 4 hrs. We might distract her from crying for 5 mins, then she starts crying soon after.
The incessant crying is driving us nuts. We and my mother-in-law had lost patience with her a few times and scolded her. Though we know it's not her fault.
We prayed and are praying. Lord, pls bless us with the patience and strength to endure this period of affliction. Pls take away Charlene's discomfort and make her calm and alert. We thank the Lord hat the seizures have been very much reduced from 12-20 a day to 1-2 a day.
Monday, November 22, 2010
22 Nov 10
Today, we saw the surgeon who kindly follow up on the barium swallow test results. Charlene's reflux is very minimal. The surgeon is v pleased. She is eager to change Charlene's anti-reflux medication to a less potent one n to reduce dosage. We have been praying for Charlene's reflux to be healed (refer to prayer list) n we thank n praise God for answering our prayers! The surgeon was also pleased with Charlene's physical growth.
Thursday, November 18, 2010
Charlene's new clothes - Part 1
For bday presents, Charlene received mostly clothes.
Partially due to our requests to our friends and relatives, because Charlene don't really want to play with toys (for now).
To express our appreciation, we decide to take photos whenever Charlene wear new clothes.
So below are some of the new clothes Charlene has worn for the past 2 weeks.
Note that in almost all the photos, she is crying, bec well, she has been crying whenever she's awake.
(ok, this is not Charlene's new clothes, but this photo is very cute...=P)
18 Nov 10
The neurologists have not been able to give us a proper diagnosis.
When we stumbled across niamhs' blog, we found that charlene's condition is very similar to her medical condition, migrating partial seizures. Coupled with the fact that some medical literature had shown that potassium bromide has some success in the same condition,it seems to indicate that Charlene's condition is that. The blog noted that migrating partial seizures have no attributable cause medically, though the medical science suggests that mitochondrial disorder is a likely cause.
Interestingly, one doctor, a geneticist told us in Oct that she suspect Charlene's underlying condition could be due to mitochondrial disorder.
however to confirm the diagnosis, a muscle biopsy has to be performed. It is invasive in nature as it requires surgery so she advised us against it. DNA testing are expensive so she will only recommend it unless we have "limitless funds". It also has no therapeutic value bec the mitochondrial disorder has no treatment currently.
The neurologists have not been able to give us a proper diagnosis.
When we stumbled across niamhs' blog, we found that charlene's condition is very similar to her medical condition, migrating partial seizures. Coupled with the fact that some medical literature had shown that potassium bromide has some success in the same condition,it seems to indicate that Charlene's condition is that. The blog noted that migrating partial seizures have no attributable cause medically, though the medical science suggests that mitochondrial disorder is a likely cause.
Interestingly, one doctor, a geneticist told us in Oct that she suspect Charlene's underlying condition could be due to mitochondrial disorder.
however to confirm the diagnosis, a muscle biopsy has to be performed. It is invasive in nature as it requires surgery so she advised us against it. DNA testing are expensive so she will only recommend it unless we have "limitless funds". It also has no therapeutic value bec the mitochondrial disorder has no treatment currently.
Tuesday, November 16, 2010
16 Nov 10
4 Nov 10
To our friends who have been regularly checking our blog for updates, our apologies for the late updates.
Today is the last day of school for Charlene (school holidays!)
Charlene cried a lot in the morning and it was obvious again that she wanted to sleep but could not as her needs are not satisfied (but I don't know what she wants). When we boarded my neighbour's car, she stopped crying and started the moment we got out of the car. When we stepped into the classroom, she stopped crying again. Ah, it must be the weather.
Charlene cried throughout her physio session. But her head control and rolling has improved (despite her lack of practice for the past 2 weeks). Praise the Lord!
The teacher then brought Charlene to the multi-sensory room (the last time Charlene slept throughout and didn't know she was in the room). Charlene started making some cries which seem to indicate that she is excited with the lights. But she became very tired (because of the previous physio session) and started to cry.
To our friends who have been regularly checking our blog for updates, our apologies for the late updates.
Today is the last day of school for Charlene (school holidays!)
Charlene cried a lot in the morning and it was obvious again that she wanted to sleep but could not as her needs are not satisfied (but I don't know what she wants). When we boarded my neighbour's car, she stopped crying and started the moment we got out of the car. When we stepped into the classroom, she stopped crying again. Ah, it must be the weather.
Charlene cried throughout her physio session. But her head control and rolling has improved (despite her lack of practice for the past 2 weeks). Praise the Lord!
The teacher then brought Charlene to the multi-sensory room (the last time Charlene slept throughout and didn't know she was in the room). Charlene started making some cries which seem to indicate that she is excited with the lights. But she became very tired (because of the previous physio session) and started to cry.
Sunday, November 14, 2010
14 Nov 10
14 Nov 10
We took a leap of faith and decided to bring Charlene to service. She started being cranky again. Pastor Tim's wife, Phe nie prayed for Charlene and carried her. Charlene had the excited look and even looked happy at times (we have not seen these expressions for sometime). She told us to focus on worship and carried Charlene.
After we reached home and after milk, Charlene slept soundly throughout the afternoon. She woke up in the evening and was awake and alert.
She went back to sleep and did not cry till 6+am. Praise the Lord!
We took a leap of faith and decided to bring Charlene to service. She started being cranky again. Pastor Tim's wife, Phe nie prayed for Charlene and carried her. Charlene had the excited look and even looked happy at times (we have not seen these expressions for sometime). She told us to focus on worship and carried Charlene.
After we reached home and after milk, Charlene slept soundly throughout the afternoon. She woke up in the evening and was awake and alert.
She went back to sleep and did not cry till 6+am. Praise the Lord!
Friday, November 12, 2010
12 Nov 10
12 Nov 10
Charlene was still cranky and cried quite a bit in cell. And the button always choose the wrong time to leak. I have to rock her to keep her quiet.
Thank God for Christine who helped us to carry Charlene so that we could rest and listened to others' testimonies.
Charlene was still cranky and cried quite a bit in cell. And the button always choose the wrong time to leak. I have to rock her to keep her quiet.
Thank God for Christine who helped us to carry Charlene so that we could rest and listened to others' testimonies.
Wednesday, November 10, 2010
10 Nov 10
10 Nov 10
This afternoon, 2 of our cell group members came to visit Charlene and me. Charlene was sleeping soundly so they talked to me and prayed for me. It's nice to know that there are people who care.
This afternoon, 2 of our cell group members came to visit Charlene and me. Charlene was sleeping soundly so they talked to me and prayed for me. It's nice to know that there are people who care.
Tuesday, November 9, 2010
9 Nov 10
9 Nov 10
Charlene went for her Barium Swallow meal today to check for reflux. Thank God, her preliminary results showed very little reflux!
And for the first time in a week, Charlene was awake and quiet and not crying.
Anyway, I went to look for staff nurse Cindy (neurologist's nurse). She is very nice and even check Charlene's teeth voluntarily. It seems that Charlene might be growing teeth and that might be one of the reasons why she kept crying.
Charlene went for her Barium Swallow meal today to check for reflux. Thank God, her preliminary results showed very little reflux!
And for the first time in a week, Charlene was awake and quiet and not crying.
Anyway, I went to look for staff nurse Cindy (neurologist's nurse). She is very nice and even check Charlene's teeth voluntarily. It seems that Charlene might be growing teeth and that might be one of the reasons why she kept crying.
Monday, November 1, 2010
1 Nov 10
1 Nov 10
Thank God for His abundant grace today! So many amazing things happen....
This morning, Charlene woke up and started to whine and whimper again. But she was awake and was looking around in the taxi. For the first time, she did not cry in the taxi journey. I told the taxi uncle that he is going to strike Toto for my daughter has never failed to cry in a taxi journey!
Initially, at the Eye Centre in KKH, Charlene is looking around but shortly, she started to whimper and it escalated to loud crying just at the moment when her eyes were to be checked. The optometrist told me to calm her down first. After like 20 mins, she was still crying on and off. The nurse came and said that if Charlene kept crying, we would have to come again another time. I told Charlene to cooperate.
Then all of a sudden, she stopped crying. Amazing! And in the short period (10 mins) that we were in the doctor's room, she was totally cooperative. The doctor used the analogy of a camera (eyes) connected to a computer (brain) using a cable (linkage) to illustrate the problem. At the moment, the camera which is Charlene's eyes are working fine. So the problem could be the brain or the linkage. The doctor said that nobody is sure whether Charlene can see or not but she told me to treat Charlene like a normal child and continue to expose her to visual stuff.
We then brought Charlene to the Children Surgery Centre. Cos we did not know what cause Charlene to cry, we thought might as well check if the button is fine. Normally, Charlene would wake up and start crying the moment we put her on the table for the doctor to examine. She slept throughtout and the doctor was quite pleasantly surprised. Again, she never failed in crying on the table of the surgeon.
The surgeon is pleased yet again with how well Charlene's button site is being taken care of. I told her that I needed to raise some concerns that might not be related to her specialty but she was very helpful and willing to listen. I told her about Charlene's excessive crying for the past few days and our hypotheses; reflux, phlegm, spine. After hearing that Charlene would stop crying when in prone position, she too said that reflux could be a possibility and asked if I would like to send Charlene for the barium swallow test to check. However, if it's really due to reflux, the only solution is re-surgery (re-do the fundoplication).
She said that it could also simply be Charlene's brain condition. And after hearing that the seizures are hardly happening, she said that Charlene's awareness might be heightened (which is good). But external stimuli could possibly irritate her quite a bit (too things like noise, clothes sticking to her skin) and caused her to cry. Last but not least, she might be having some pain somewhere. She proposed giving Charlene some panadol. If she stops crying, that suggests that Charlene is really experiencing pain somewhere in her body. However, if she continues to cry, then it might be due to the brain.
After that, we brought her to Ward 66 and the nurses were very helpful and did a suction for Charlene. The nurse said that Charlene doesn't have a lot of phlegm.
Thank God for the surgeon and the nurse who went the extra mile to help us!
Later on at home, when I carried Charlene and sang songs to her for half an hour, she did not cry. She was listening to me attentively. I was very happy and thankful.
Yesterday in church, Wendy told me that her mum said that Charlene might be experiencing cerebral irritation. While surfing for more information on this condition, I stumble upon a blog and it was a major discovery! The blog was also a journal from the parents of a girl who had migrating partial epilepsy. Whatever was described sounded so familiar to what Charlene had gone through. "No known cause found. All genetic, metabolic tests and other tests came back negative. The child has some good days (few seizures) and bad days (a lot of seizures). The child is on many anti-convulsants but they don't seem to control the seizures. The child has many medical complications". The blog provided many useful information that the doctor had and could not have told us.
Thank you Lord for today.
Thank God for His abundant grace today! So many amazing things happen....
This morning, Charlene woke up and started to whine and whimper again. But she was awake and was looking around in the taxi. For the first time, she did not cry in the taxi journey. I told the taxi uncle that he is going to strike Toto for my daughter has never failed to cry in a taxi journey!
Initially, at the Eye Centre in KKH, Charlene is looking around but shortly, she started to whimper and it escalated to loud crying just at the moment when her eyes were to be checked. The optometrist told me to calm her down first. After like 20 mins, she was still crying on and off. The nurse came and said that if Charlene kept crying, we would have to come again another time. I told Charlene to cooperate.
Then all of a sudden, she stopped crying. Amazing! And in the short period (10 mins) that we were in the doctor's room, she was totally cooperative. The doctor used the analogy of a camera (eyes) connected to a computer (brain) using a cable (linkage) to illustrate the problem. At the moment, the camera which is Charlene's eyes are working fine. So the problem could be the brain or the linkage. The doctor said that nobody is sure whether Charlene can see or not but she told me to treat Charlene like a normal child and continue to expose her to visual stuff.
We then brought Charlene to the Children Surgery Centre. Cos we did not know what cause Charlene to cry, we thought might as well check if the button is fine. Normally, Charlene would wake up and start crying the moment we put her on the table for the doctor to examine. She slept throughtout and the doctor was quite pleasantly surprised. Again, she never failed in crying on the table of the surgeon.
The surgeon is pleased yet again with how well Charlene's button site is being taken care of. I told her that I needed to raise some concerns that might not be related to her specialty but she was very helpful and willing to listen. I told her about Charlene's excessive crying for the past few days and our hypotheses; reflux, phlegm, spine. After hearing that Charlene would stop crying when in prone position, she too said that reflux could be a possibility and asked if I would like to send Charlene for the barium swallow test to check. However, if it's really due to reflux, the only solution is re-surgery (re-do the fundoplication).
She said that it could also simply be Charlene's brain condition. And after hearing that the seizures are hardly happening, she said that Charlene's awareness might be heightened (which is good). But external stimuli could possibly irritate her quite a bit (too things like noise, clothes sticking to her skin) and caused her to cry. Last but not least, she might be having some pain somewhere. She proposed giving Charlene some panadol. If she stops crying, that suggests that Charlene is really experiencing pain somewhere in her body. However, if she continues to cry, then it might be due to the brain.
After that, we brought her to Ward 66 and the nurses were very helpful and did a suction for Charlene. The nurse said that Charlene doesn't have a lot of phlegm.
Thank God for the surgeon and the nurse who went the extra mile to help us!
Later on at home, when I carried Charlene and sang songs to her for half an hour, she did not cry. She was listening to me attentively. I was very happy and thankful.
Yesterday in church, Wendy told me that her mum said that Charlene might be experiencing cerebral irritation. While surfing for more information on this condition, I stumble upon a blog and it was a major discovery! The blog was also a journal from the parents of a girl who had migrating partial epilepsy. Whatever was described sounded so familiar to what Charlene had gone through. "No known cause found. All genetic, metabolic tests and other tests came back negative. The child has some good days (few seizures) and bad days (a lot of seizures). The child is on many anti-convulsants but they don't seem to control the seizures. The child has many medical complications". The blog provided many useful information that the doctor had and could not have told us.
Thank you Lord for today.
Sunday, October 31, 2010
26 Oct - 31 Oct 10
Charlene has been crying a lot. She cries once she's awake. The worst was on Wed and Thur when she cried 14 hrs each day. I was quite irritated though logically I knew it was not her fault. We did everything we could but to no avail. She just kept crying and crying and only stopped 5-10 mins or when she fell asleep.
On the other hand, she was constantly breaking record second by second. She didn't have any seizure since Tue 7am till Sat 945pm. That was the longest time in her life that she has gone without seizures; 110hrs and 45 mins.
All Praise and Glory Be to God!!!
Dez and I decided that we would bring Charlene to the miracle service in Lighthouse Evangelist Church. There is a special room for children with special needs so we don't have to worry if Charlene cries loudly as she will only disturb that few people in the room and not the entire congregation. Amazingly, Charlene did not cry throughout the whole sermon. And it seems like she was listening attentively.
This morning (31st Oct), she was awake at 7am so Dez and I decided to bring Charlene to church. If she cries very loudly, then we have no choice but to leave. We are thankful for the care and concern showered upon us by our fellow brothers and sisters in Christ. Our faith and spirits are also lifted as they prayed for Charlene and for us.
We still do not know what causes Charlene to cry so much. We will do our best to cater to her needs and pray continuously for God to heal her.
On the other hand, she was constantly breaking record second by second. She didn't have any seizure since Tue 7am till Sat 945pm. That was the longest time in her life that she has gone without seizures; 110hrs and 45 mins.
All Praise and Glory Be to God!!!
Dez and I decided that we would bring Charlene to the miracle service in Lighthouse Evangelist Church. There is a special room for children with special needs so we don't have to worry if Charlene cries loudly as she will only disturb that few people in the room and not the entire congregation. Amazingly, Charlene did not cry throughout the whole sermon. And it seems like she was listening attentively.
This morning (31st Oct), she was awake at 7am so Dez and I decided to bring Charlene to church. If she cries very loudly, then we have no choice but to leave. We are thankful for the care and concern showered upon us by our fellow brothers and sisters in Christ. Our faith and spirits are also lifted as they prayed for Charlene and for us.
We still do not know what causes Charlene to cry so much. We will do our best to cater to her needs and pray continuously for God to heal her.
Monday, October 25, 2010
25th Oct 10
Today, we went to KKH for appointments; feeding clinic and neurologist.
The dietician was shocked by Charlene's growth. She currently weighs 9.1kg (and is gaining on average 30g a day). That was too much as Charlene (unlike normal babies) do not use up too much of her energy. The dietician ordered us to stop the current formula milk (which is a special weight gain formula) and switch to another brand. She also told us to try not feeding Charlene in the middle of the night.
The dietician was shocked by Charlene's growth. She currently weighs 9.1kg (and is gaining on average 30g a day). That was too much as Charlene (unlike normal babies) do not use up too much of her energy. The dietician ordered us to stop the current formula milk (which is a special weight gain formula) and switch to another brand. She also told us to try not feeding Charlene in the middle of the night.
Monday, October 18, 2010
18 Oct 10
18 Oct 10
One of the present from our cell group friends is a exercise mat. It comes with sound and little toys, and is very cooling.
Placed Charlene on the exercise mat today and she was quite amused by the sounds and little toys. Saw her gave her 1-sided smile.
When Dez came home, we sang Christian baby songs to her & moved her hands... Charlene was actually excited! She smiled at us when we played with her... this is the 1st time Dez had seen her responding to our playing!
Thank God for Your grace upon Charlene! We can see that Charlene has been making some improvements, day by day, month by month. Though we do not know Your plans, we trust that Your plan is to prosper us and for the good of Charlene. Amen.
One of the present from our cell group friends is a exercise mat. It comes with sound and little toys, and is very cooling.
Placed Charlene on the exercise mat today and she was quite amused by the sounds and little toys. Saw her gave her 1-sided smile.
When Dez came home, we sang Christian baby songs to her & moved her hands... Charlene was actually excited! She smiled at us when we played with her... this is the 1st time Dez had seen her responding to our playing!
Thank God for Your grace upon Charlene! We can see that Charlene has been making some improvements, day by day, month by month. Though we do not know Your plans, we trust that Your plan is to prosper us and for the good of Charlene. Amen.
Sunday, October 17, 2010
Charlene's One Year Old Bday Party - post entry
"A miracle needs no explanation to those who believe in God; to those who don't, no explanation is enough."
God is good! He answer our prayers, though not often in the form that we expect, but always in the spirit that we prayed for.
Me and Dez were very tired even before the bday party starts (see 17 Oct entry). Charlene did not stop crying after she woke up at 9am (short nap of 2 hours). She did stop for a while when Wanfen, Audrey and Shiyun came up to our place...but only for a while.
Charlene cried while having milk at 9am and 12pm, and both times she vomitted and turned slightly blue. Fortunately, we turned her out fast enough so that she did not choke on her vomit.
We prayed to God that He bless Charlene with peace and calm during the party. We prayed that her PEG stopped leaking and that we do not need to change her gauze mid-way during the party. We prayed that she won't vomit during the party.
She kept crying and leaking despite our best efforts.
By 12pm. Dez and I were tired, hungry and dirty. Both of us have not bathe and Charlene was crying non-stop, & leaking and unchanged. Dez and I and my MIL have to take turns to bathe, then we rotate the carrying of Charlene.
By 1245pm, we decided to send me down to entertain the guests while Dez stayed up to help change Charlene.
Dez and MIL brought Charlene down at 115pm. Miraculously, Charlene stopped crying the minute they stepped out of the house. And when Charlene was brought down to the party, she remained calm, though a little overwhelmed by the people. She was looking around, a little dazed at the people around her, but she didn't cry nor throw a tantrum.
She had 1 seizure episode, but noone around her realised it, bec the episode intensity was very mild.
Mid-way through the party, Charlene finally fell asleep. She woke up during the bday song, looking stunned while I hold her hands to cut the cake.
Both Dez and I had some time to chit chat with our friends... we could never believe that we could do that 30 mins before the party.
We thank Jesus for His grace!
Thanks to Wanfen, Audrey and Shiyun who came early to do up the deco... it really bring up the mood for the bday party.
Thanks to my BIL for the exotic cake and helping to clear the mess. He had always been a man-of-action for me and Dez.
Thanks to our cell members who came to the party despite the hectic schedule in church.
Thanks to Ah Sang and Chow Lin to make their way here to lend their presence.
Thanks to our Swaps frens who helped to take down the deco and cleared the area.
Thank you all for your generous ang bao and presents for Charlene. Your presence for the event... allowed us to capture some of our lost time b4 Charlene's arrival.
God is good! He answer our prayers, though not often in the form that we expect, but always in the spirit that we prayed for.
Me and Dez were very tired even before the bday party starts (see 17 Oct entry). Charlene did not stop crying after she woke up at 9am (short nap of 2 hours). She did stop for a while when Wanfen, Audrey and Shiyun came up to our place...but only for a while.
Charlene cried while having milk at 9am and 12pm, and both times she vomitted and turned slightly blue. Fortunately, we turned her out fast enough so that she did not choke on her vomit.
We prayed to God that He bless Charlene with peace and calm during the party. We prayed that her PEG stopped leaking and that we do not need to change her gauze mid-way during the party. We prayed that she won't vomit during the party.
She kept crying and leaking despite our best efforts.
By 12pm. Dez and I were tired, hungry and dirty. Both of us have not bathe and Charlene was crying non-stop, & leaking and unchanged. Dez and I and my MIL have to take turns to bathe, then we rotate the carrying of Charlene.
By 1245pm, we decided to send me down to entertain the guests while Dez stayed up to help change Charlene.
Dez and MIL brought Charlene down at 115pm. Miraculously, Charlene stopped crying the minute they stepped out of the house. And when Charlene was brought down to the party, she remained calm, though a little overwhelmed by the people. She was looking around, a little dazed at the people around her, but she didn't cry nor throw a tantrum.
She had 1 seizure episode, but noone around her realised it, bec the episode intensity was very mild.
Mid-way through the party, Charlene finally fell asleep. She woke up during the bday song, looking stunned while I hold her hands to cut the cake.
Both Dez and I had some time to chit chat with our friends... we could never believe that we could do that 30 mins before the party.
We thank Jesus for His grace!
Thanks to Wanfen, Audrey and Shiyun who came early to do up the deco... it really bring up the mood for the bday party.
Thanks to my BIL for the exotic cake and helping to clear the mess. He had always been a man-of-action for me and Dez.
Thanks to our cell members who came to the party despite the hectic schedule in church.
Thanks to Ah Sang and Chow Lin to make their way here to lend their presence.
Thanks to our Swaps frens who helped to take down the deco and cleared the area.
Thank you all for your generous ang bao and presents for Charlene. Your presence for the event... allowed us to capture some of our lost time b4 Charlene's arrival.
Charlene in her little pink dress
Charlene's One Year Old Bday Party
Hi to all,
As some of you might know, we are holding Charlene's bday party today at 1pm - 3pm.
To tell the truth, me and Dez were struggling between holding a party or just have a mini celebration in our family. The party will be draining for us and for Charlene, has to be short bec of feeding considerations and the visitors can't really play with Charlene anyway. To a certain extent, it seems a little pointless to spend so much energy and effort when we are often tired from the daily strains.
But we finally decided to go ahead, bec we want to remember how far Charlene has come. She has been fighting since a year back, and thriving despite all the afflictions. All thanks to the divine grace from Jesus, she was able to come to this day. We do not know God's plans for Charlene, so we hope to capture this moment, this milestone, that even if God decided to take her back into His Kingdom, we have wonderful memories about her.
We apologise that we can't invite all our friends/colleagues to the party. We are worried that if the party drags too long, Charlene will be tired and upset. Also, if we invite all our friends/colleagues, the party will be very big and we will have a difficult time to manage the party and Charlene.
After much deliberation, we decided to invite our relatives, our cell group members and friends who have visited and seen Charlene. Our relatives, we can't really choose.... our cell group members, they have visited Charlene many times and have seen her in church... our friends who have visited her, well, they will be familiar with her and so will not be shock at her conditions (PEG or seizures).
To those who we aren't able to invite, we are genuinely sorry.
As some of you might know, we are holding Charlene's bday party today at 1pm - 3pm.
To tell the truth, me and Dez were struggling between holding a party or just have a mini celebration in our family. The party will be draining for us and for Charlene, has to be short bec of feeding considerations and the visitors can't really play with Charlene anyway. To a certain extent, it seems a little pointless to spend so much energy and effort when we are often tired from the daily strains.
But we finally decided to go ahead, bec we want to remember how far Charlene has come. She has been fighting since a year back, and thriving despite all the afflictions. All thanks to the divine grace from Jesus, she was able to come to this day. We do not know God's plans for Charlene, so we hope to capture this moment, this milestone, that even if God decided to take her back into His Kingdom, we have wonderful memories about her.
We apologise that we can't invite all our friends/colleagues to the party. We are worried that if the party drags too long, Charlene will be tired and upset. Also, if we invite all our friends/colleagues, the party will be very big and we will have a difficult time to manage the party and Charlene.
After much deliberation, we decided to invite our relatives, our cell group members and friends who have visited and seen Charlene. Our relatives, we can't really choose.... our cell group members, they have visited Charlene many times and have seen her in church... our friends who have visited her, well, they will be familiar with her and so will not be shock at her conditions (PEG or seizures).
To those who we aren't able to invite, we are genuinely sorry.
17 Oct 10
17 Oct 10
Charlene started crying at 230am, initially whimpering but gradually escalating to full-blown crying. Dez had to wake up to help out my FIL in calming her down, giving her milk... but despite all his efforts, Charlene never stopped crying.
We are not sure why she's crying. The worst thing about crying is that it will start of the whole chain of problems... crying --> coughing ---> leaking gauze ---> wet diapers ---> discomfort ---> more crying. Though we all tried to change the gauze & diapers to make her comfortable, if the crying doesn't stop, the cycle won't stop.
At about 4am, me and my MIL woke up to help out to calm her down. But no use, Charlene just never stopped crying. Though there were pockets of time in which Charlene stopped crying momentarily, she cried all the way till 645am.
Charlene finally slept after she was put in prone position. We don't usually put her in prone position bec the gauze will leak. I decided to put her in that position, because the gauze was already leaking and the bed sheet already dirty.
Everyone is exhausted.
Charlene started crying at 230am, initially whimpering but gradually escalating to full-blown crying. Dez had to wake up to help out my FIL in calming her down, giving her milk... but despite all his efforts, Charlene never stopped crying.
We are not sure why she's crying. The worst thing about crying is that it will start of the whole chain of problems... crying --> coughing ---> leaking gauze ---> wet diapers ---> discomfort ---> more crying. Though we all tried to change the gauze & diapers to make her comfortable, if the crying doesn't stop, the cycle won't stop.
At about 4am, me and my MIL woke up to help out to calm her down. But no use, Charlene just never stopped crying. Though there were pockets of time in which Charlene stopped crying momentarily, she cried all the way till 645am.
Charlene finally slept after she was put in prone position. We don't usually put her in prone position bec the gauze will leak. I decided to put her in that position, because the gauze was already leaking and the bed sheet already dirty.
Everyone is exhausted.
Wednesday, October 13, 2010
13 Oct 10
Charlene is finally discharged today. She still has phlegm and is coughing. Her saturation at times is no good but dr say adjust position. Have to do chest physio for her and do suction regularly.
Dr never adjust her seizures med. Say must give potassium bromide a chance to work (takes at least 3 weeks to stabilise). And even if her fits are more than 20 times a day and in clusters, they don't think we should bring her in. Just self-administer emergency med that might abort seizures.
I am glad that I am not a doctor.
Dr never adjust her seizures med. Say must give potassium bromide a chance to work (takes at least 3 weeks to stabilise). And even if her fits are more than 20 times a day and in clusters, they don't think we should bring her in. Just self-administer emergency med that might abort seizures.
I am glad that I am not a doctor.
Monday, October 11, 2010
11 Oct 10
Don't know for what reason, Charlene started having many seizures and clusters again today. The doctors tried a new rectal med to see if the clusters will stop. Well, it kind of stop for a while but came back again. Basically, when she transits from awakeness to sleep, she will keep having it in clusters. But the moment she goes into deep sleep, v few or no seizures will occur.
Saturday, October 9, 2010
9 Oct 10
Charlene had one seizure today. Though we really wanted the seizures to be gone for good, we are still thankful that her seizures are under control.
Friday, October 8, 2010
8 Oct 10
Praise the Lord!!! Charlene is free of seizures for 39 hours and counting... We thank God and trust in Him to deliver Charlene. We pray that Charlene will recover from her cough and flu and be as awake and alert as before with no seizures.
Thursday, October 7, 2010
7 Oct 10
At 2am, the Lord woke me up (that's what I think) and I checked Charlene's temperature -- 38.8 deg. I gave her panadol, sticked the Kodomo fever kool on her head and put the ice pillow under her back and went back to sleep. At 4am, Dez woke me up and said that Charlene's fever is not subsiding. It is at 39.6deg and sponging with ice water for 15mins doesnt even lower the temperature.
We rushed Charlene back to A&E.
The doc said she is breathless and gave her some oxygen and admitted her.
The fever began coming down and her seizures stopped after 825am. But Charlene is totally knocked out (either cos she is sick or cos of drowsiness caused by potassium bromide). However, the doc heard some phlegmy noises coming from the lungs and sent her for chest X-ray. They suspect lung infection and took some blood for blood culture test.
Dr Tan (the geneticist) came to tell me some interesting stuff. She said that many things could cause seizures. But to cause both seizures and the heart muscle to be big, not many causes. She said one likely hypothesis that could explain for Charlene's condition could be mitochondria disorder. She said that unless we want a second child, she would not suggest verifying it as the procedure is an invasive one (a surgery to take out a muscle for testing). However, if it is really mitochondria disorder, taking some coenzymes might help in controlling seizures. But she said wait for potassium bromide to settle first. Anyway, the good news is that 2 other medications that Charlene is on (not anti-convulsants) can be stopped cos they don't seem to help in controlling her seizures. Basically, Dr Tan prescribed them cos it was difficult to determine if Charlene was lacking in these vitamins which could cause the seizures. This could save us $300+ a month. Thank God!
We rushed Charlene back to A&E.
The doc said she is breathless and gave her some oxygen and admitted her.
The fever began coming down and her seizures stopped after 825am. But Charlene is totally knocked out (either cos she is sick or cos of drowsiness caused by potassium bromide). However, the doc heard some phlegmy noises coming from the lungs and sent her for chest X-ray. They suspect lung infection and took some blood for blood culture test.
Dr Tan (the geneticist) came to tell me some interesting stuff. She said that many things could cause seizures. But to cause both seizures and the heart muscle to be big, not many causes. She said one likely hypothesis that could explain for Charlene's condition could be mitochondria disorder. She said that unless we want a second child, she would not suggest verifying it as the procedure is an invasive one (a surgery to take out a muscle for testing). However, if it is really mitochondria disorder, taking some coenzymes might help in controlling seizures. But she said wait for potassium bromide to settle first. Anyway, the good news is that 2 other medications that Charlene is on (not anti-convulsants) can be stopped cos they don't seem to help in controlling her seizures. Basically, Dr Tan prescribed them cos it was difficult to determine if Charlene was lacking in these vitamins which could cause the seizures. This could save us $300+ a month. Thank God!
Wednesday, October 6, 2010
6 Oct 10
Charlene started having 2 clusters of seizures in the morning.
At noon time, the doc started the new anti-convulsant potassium bromide.
Charlene was still coughing badly but her lungs were clear.
The doc wanted to keep her for one more day of observation due to the clustering but I asked if we could bring her home cos her seizures were not more than her baseline of 12 a day. The doc obliged and we brought Charlene home.
Charlene puked in the taxi ride and I suctioned her the first thing we reached home. After suctioning, Dez noticed that Charlene's face was flushed but her limbs were cold. We measured her temperature and it was 38.8 deg. We were stunned. We gave her panadol immediately. We also thanked God that the room main light was on (cos I was doing suction) and as such Dez could see her flushed face.
At noon time, the doc started the new anti-convulsant potassium bromide.
Charlene was still coughing badly but her lungs were clear.
The doc wanted to keep her for one more day of observation due to the clustering but I asked if we could bring her home cos her seizures were not more than her baseline of 12 a day. The doc obliged and we brought Charlene home.
Charlene puked in the taxi ride and I suctioned her the first thing we reached home. After suctioning, Dez noticed that Charlene's face was flushed but her limbs were cold. We measured her temperature and it was 38.8 deg. We were stunned. We gave her panadol immediately. We also thanked God that the room main light was on (cos I was doing suction) and as such Dez could see her flushed face.
Tuesday, October 5, 2010
5 Oct 10
Charlene's seizures were at single digit for the past 2 days. The doctor told us to consider a new medication. Either potassium bromide or another med starting with v (can't spell). The doc said that potassium bromide might help cos of Charlene's see-sawing seizures.
We decided that we would give potassium bromide a shot. Our little research showed that potassium bromide is the first ever anti-convulsant used before phenobarbitone was invented. However, due to its narrow theraputic range (i.e. difficulty in determining the effective dosage), it is seldom used in humans but commonly used in dogs.
We smsed our prayer support group and got our brothers and sisters in Christ to pray that the medication would be effective in controlling Charlene's seizures. In fact, with potassium bromide being effective, we could take off other anti-convulsants which have more side effects.
We also highlighted our financial situation with the doc and asked if some of the more expensive medication (which are not anti-convulsants could be taken off).
I was also thankful to Pastor Timothy for specially coming down to pray for Charlene and for me.
We decided that we would give potassium bromide a shot. Our little research showed that potassium bromide is the first ever anti-convulsant used before phenobarbitone was invented. However, due to its narrow theraputic range (i.e. difficulty in determining the effective dosage), it is seldom used in humans but commonly used in dogs.
We smsed our prayer support group and got our brothers and sisters in Christ to pray that the medication would be effective in controlling Charlene's seizures. In fact, with potassium bromide being effective, we could take off other anti-convulsants which have more side effects.
We also highlighted our financial situation with the doc and asked if some of the more expensive medication (which are not anti-convulsants could be taken off).
I was also thankful to Pastor Timothy for specially coming down to pray for Charlene and for me.
Sunday, October 3, 2010
3 Oct 10
At 5am, Charlene started having fits in clusters (i.e. 3 fits in an hour) and the trend carried on till 7+am. We went to church and the clusters stopped during worship. However, it carried on and by 6pm, we decided that we had no choice but to send Charlene to the hospital.
Along our way, I sent out sms to a few brothers and sisters and to Pastor Timothy. Strangely and amazingly, Charlene stopped having fits throughout our wait in A&E. It must be due to our brothers and sisters in YMM who were praying for us. Thank you Pastor Timothy for sending out our sms to all cell group leaders.
However, given her medical history and the frequency of her fits, she was admitted for observation. Charlene was also coughing quite a bit.
Along our way, I sent out sms to a few brothers and sisters and to Pastor Timothy. Strangely and amazingly, Charlene stopped having fits throughout our wait in A&E. It must be due to our brothers and sisters in YMM who were praying for us. Thank you Pastor Timothy for sending out our sms to all cell group leaders.
However, given her medical history and the frequency of her fits, she was admitted for observation. Charlene was also coughing quite a bit.
Thursday, September 30, 2010
30 Sept 10
30 Sept 10
I played with Charlene. Not much response. Not even when she looked at herself in the mirror. But after I took 3 white bears out and make her hit the bears with her hand, she looked excited and was grinning. So I did that repeatedly and for a while, she was grinning. Then she stopped. Perhaps, the novelty has worn off. I took a doraemon whose head bob up and down (those running on solar power) and showed it to her. Charlene had the amused look. It's good that she is more awake and alert and I can do much more with her though I amd afraid whether I'm doing it correctly. Her fits is still bad.
I played with Charlene. Not much response. Not even when she looked at herself in the mirror. But after I took 3 white bears out and make her hit the bears with her hand, she looked excited and was grinning. So I did that repeatedly and for a while, she was grinning. Then she stopped. Perhaps, the novelty has worn off. I took a doraemon whose head bob up and down (those running on solar power) and showed it to her. Charlene had the amused look. It's good that she is more awake and alert and I can do much more with her though I amd afraid whether I'm doing it correctly. Her fits is still bad.
Wednesday, September 29, 2010
29 Sept 10
29 Sept 10
I don't know what went wrong. Charlene had so many fits . 24 in all and 2 clusters. The problem is Charlene's fits are not at a stable equilibrium as yet. One day good (single digit), one day bad (double digit and clusters). The current anti-convulsant medication that Charlene is on doesn't seem to be working too well. We do not want to add new medication.
Dear friends, please pray for Charlene. Thank you.
I don't know what went wrong. Charlene had so many fits . 24 in all and 2 clusters. The problem is Charlene's fits are not at a stable equilibrium as yet. One day good (single digit), one day bad (double digit and clusters). The current anti-convulsant medication that Charlene is on doesn't seem to be working too well. We do not want to add new medication.
Dear friends, please pray for Charlene. Thank you.
Tuesday, September 28, 2010
28 Sept 10
28 Sept 10
Today is Charlene's first day to school (Rainbow Centre Yishun).
She slept the whole morning. When we stepped out of the house, she opened her eyes to look around. Our neighbour volunteered to give us a ride as they are sending their grandson to nursery and it was on the way. So, we went back to the house to rest first. The moment my mil sat down, Charlene slept. Is she bored of the house? And when we set off again, she woke up, looking around. So amusing. I thank God for sending us free transport.
Charlene is a very good girl. She whined and complained but she did not cry loudly during class. The therapists came to do exercises with her and gave me homework to do. The main focus is to train her neck control and head control. They suggest putting Charlene on her tummy (in prone) as many times as possible in the day. They also say not to carry her unless necessary. Let her sit upright and support her head if it bobs down.
Today is Charlene's first day to school (Rainbow Centre Yishun).
She slept the whole morning. When we stepped out of the house, she opened her eyes to look around. Our neighbour volunteered to give us a ride as they are sending their grandson to nursery and it was on the way. So, we went back to the house to rest first. The moment my mil sat down, Charlene slept. Is she bored of the house? And when we set off again, she woke up, looking around. So amusing. I thank God for sending us free transport.
Charlene is a very good girl. She whined and complained but she did not cry loudly during class. The therapists came to do exercises with her and gave me homework to do. The main focus is to train her neck control and head control. They suggest putting Charlene on her tummy (in prone) as many times as possible in the day. They also say not to carry her unless necessary. Let her sit upright and support her head if it bobs down.
Monday, September 27, 2010
27 Sept 10
27 Sept 10
Charlene had many fits all of a sudden. Every hourly. I would like to believe that her brain is re-wiring and causing this.
My mil and I saw Charlene smile (full smile) in her sleep for at least 20sec. I was appreciating it so didn't have time to grab the camera. Thank you Lord Jesus for encouraging me.
Charlene kept crying throughout the physio session but she did 3 excellent rolls. Wonder what I didn't do correctly. Why is it that Charlene can roll so well in hospital but not at home? The occupational therapist is good. She managed to stop Charlene from crying by getting her to suck the pacifier.
Though physio charges are expensive but they are indeed useful.
Charlene had many fits all of a sudden. Every hourly. I would like to believe that her brain is re-wiring and causing this.
My mil and I saw Charlene smile (full smile) in her sleep for at least 20sec. I was appreciating it so didn't have time to grab the camera. Thank you Lord Jesus for encouraging me.
Charlene kept crying throughout the physio session but she did 3 excellent rolls. Wonder what I didn't do correctly. Why is it that Charlene can roll so well in hospital but not at home? The occupational therapist is good. She managed to stop Charlene from crying by getting her to suck the pacifier.
Though physio charges are expensive but they are indeed useful.
Sunday, September 26, 2010
25 Sep 10
Auntie June, uncle Jason and auntie Wanfen came to visit charlene today. June and Jason bought a lot of snacks for us, and Wanfen bought diapers.
We chatted about June's new house, wedding packages & other random stuffs. Dez and I felt good chatting with our old friends who come to visit us. It helped us regain some normalcy in our life. Thank you June, Wanfen and Jason for visiting. We really appreciate your visit.
Charlene fits were not good. Her total hit 13. It seems that it is not stablised yet and is yo-yoing. Last 2 daya were single digits and today hit double digit. Lord we prayed that Charlene seizures be kept low with the current med, and that her seizures be healed totally in due time.
We chatted about June's new house, wedding packages & other random stuffs. Dez and I felt good chatting with our old friends who come to visit us. It helped us regain some normalcy in our life. Thank you June, Wanfen and Jason for visiting. We really appreciate your visit.
Charlene fits were not good. Her total hit 13. It seems that it is not stablised yet and is yo-yoing. Last 2 daya were single digits and today hit double digit. Lord we prayed that Charlene seizures be kept low with the current med, and that her seizures be healed totally in due time.
24 Sep 10
24 Sep 10
Charlene 'screamed' (fit) herself awake @8am & demanded to be carried. Once she's put down on cot to change gauze or diaper, she will start to cry. And shortly after being picked up, she stopped crying.
Despite her little protests, we managed to finish the physio ex! And she again enthusiastically drank my mother's soup. But she got too excited again and choke on the soup, and pikes all all she has drunk.
My grandma & 4th aunt were amused by her crying. Sound like singing bec got rhythm. Haha.
Charlene 'screamed' (fit) herself awake @8am & demanded to be carried. Once she's put down on cot to change gauze or diaper, she will start to cry. And shortly after being picked up, she stopped crying.
Despite her little protests, we managed to finish the physio ex! And she again enthusiastically drank my mother's soup. But she got too excited again and choke on the soup, and pikes all all she has drunk.
My grandma & 4th aunt were amused by her crying. Sound like singing bec got rhythm. Haha.
Saturday, September 25, 2010
23 Sep 10
23 Sep 10
Praise the Lord! There were no fits from 12mn to 6am. Charlene was so tired out cos she didn't sleep enough yesterday.
Thank & praise God! Charlene had only 5 fits today; it had been some time since we had less than 8. We pray to God that her fits will stabilsed under 5 per day or lower.
Praise the Lord! There were no fits from 12mn to 6am. Charlene was so tired out cos she didn't sleep enough yesterday.
Thank & praise God! Charlene had only 5 fits today; it had been some time since we had less than 8. We pray to God that her fits will stabilsed under 5 per day or lower.
22 Sep 10
22 Sep 10
I told Charlene that coming Mon, she will be going to KKH for physio & after which we'll go visit her nurses @ NICU/SCN. I told her that she"ll get to see her favorite nurse Angeline and she gave me that grinning look.
Charlene is very awake and I thank God that we are able to complete all the physio ex. There was 1 point that Charlene seemed to be listening to music.
The fits aren't that bad; only when she tries to sleep, then it will appear.
I told Charlene that coming Mon, she will be going to KKH for physio & after which we'll go visit her nurses @ NICU/SCN. I told her that she"ll get to see her favorite nurse Angeline and she gave me that grinning look.
Charlene is very awake and I thank God that we are able to complete all the physio ex. There was 1 point that Charlene seemed to be listening to music.
The fits aren't that bad; only when she tries to sleep, then it will appear.
21 Sep 10
21 Sep 10
Charlene was quite happy and well behaved in the morning. I told her that coming sat that she will have visitors and that she better be a good girl cos auntie June really want to see her. Then I said "auntie June is going to get married with uncle Jason". And my gal gave the excited look and a grinning face. I was so amused.
Charlene fits are appearing in pairs. It's like after the first one, she will go into a 2nd one after 10 plus mins. Also, she seems to be more easily frightened and have more involuntary jerks.
Lord, pls guide ua and help us. We do not want to add the new medication which has side effects on Charlene's eyes. Please Lord, with the current med or by Your divine hand, take Charlene's seizures away.
Daily remembrance.
Isa 38:20.The Lord is ever ready to save His people in every trouble; The Lord has saved us and He will save us even to the end.
Charlene was quite happy and well behaved in the morning. I told her that coming sat that she will have visitors and that she better be a good girl cos auntie June really want to see her. Then I said "auntie June is going to get married with uncle Jason". And my gal gave the excited look and a grinning face. I was so amused.
Charlene fits are appearing in pairs. It's like after the first one, she will go into a 2nd one after 10 plus mins. Also, she seems to be more easily frightened and have more involuntary jerks.
Lord, pls guide ua and help us. We do not want to add the new medication which has side effects on Charlene's eyes. Please Lord, with the current med or by Your divine hand, take Charlene's seizures away.
Daily remembrance.
Isa 38:20.The Lord is ever ready to save His people in every trouble; The Lord has saved us and He will save us even to the end.
20 Sep 10
20 Sep 10
Charlene had a fit early @6am and started crying. Dez had to go to work so I carried her. She cried & stopped & cried again. Behaving like colicky baby.
I took care of her the whole morning. Did he physio ex; sitting, stretching, rolling, prone (head ex), everything. Charlene was good & didn't complain. Thank God! I talked to her & stimulated her. She showed me the excited look & even looked like she smiled at me. I was very happy.
She's very clever. Once I put her down on the dot, she'll cry & demand to be carried. She threw up a few times today; mostly phlegm.
And praise Lord! When Charlene was awake from 7am - 130pm, she didn't have any fits!
Charlene had a fit early @6am and started crying. Dez had to go to work so I carried her. She cried & stopped & cried again. Behaving like colicky baby.
I took care of her the whole morning. Did he physio ex; sitting, stretching, rolling, prone (head ex), everything. Charlene was good & didn't complain. Thank God! I talked to her & stimulated her. She showed me the excited look & even looked like she smiled at me. I was very happy.
She's very clever. Once I put her down on the dot, she'll cry & demand to be carried. She threw up a few times today; mostly phlegm.
And praise Lord! When Charlene was awake from 7am - 130pm, she didn't have any fits!
Sunday, September 19, 2010
19 Sep 10
19 Sep 10
We managed to bring Charlene to church today.
But our naughty Charlene was very uncooperative. She vomited just before we left and we have to change her. In the taxi, she started crying and causing the gauze to to be wet. We have to change twice even before reaching church. She was crying in the church and disrupted the initial part of the service.
However, once again, Charlene stopped her crying during the worship songs. After the singing ended, Charlene got upset again and Des had to bring her out to sing to her and rock her.
Praise the Lord for infusing the Holy Spirit in Charlene that she responds positively to worship songs. Lord, we count our blessings that Charlene likes to listen to songs. We pray that one day she may sing to You and give You her thanks and proclaim her faith. Amen.
We managed to bring Charlene to church today.
But our naughty Charlene was very uncooperative. She vomited just before we left and we have to change her. In the taxi, she started crying and causing the gauze to to be wet. We have to change twice even before reaching church. She was crying in the church and disrupted the initial part of the service.
However, once again, Charlene stopped her crying during the worship songs. After the singing ended, Charlene got upset again and Des had to bring her out to sing to her and rock her.
Praise the Lord for infusing the Holy Spirit in Charlene that she responds positively to worship songs. Lord, we count our blessings that Charlene likes to listen to songs. We pray that one day she may sing to You and give You her thanks and proclaim her faith. Amen.
Saturday, September 18, 2010
18 Sep 10
18 Sep 10
Charlene seizures seems to be see-sawing. It was kept at single digit today. We prayed that the seizure episodes will continue to be under 10.
Thank God that Charlene have developed a sleep-wake routine, waking up at 5-6am, keeping awake till 6-8pm and sleeping throughout the night. Praise the Lord for His blessings, because my FIL can take care of Charlene alone at night now. No longer need to activate my MIL and less tiring on Des.
Charlene seizures seems to be see-sawing. It was kept at single digit today. We prayed that the seizure episodes will continue to be under 10.
Thank God that Charlene have developed a sleep-wake routine, waking up at 5-6am, keeping awake till 6-8pm and sleeping throughout the night. Praise the Lord for His blessings, because my FIL can take care of Charlene alone at night now. No longer need to activate my MIL and less tiring on Des.
Thursday, September 16, 2010
17 Sep 10
17 Sep 10
After consulting with the neurologist, we decided to increase topomax dosage to 6+6.
After consulting with the neurologist, we decided to increase topomax dosage to 6+6.
16 Sep 10
16 Sep 10
Des took 1/2 day leave to care for Charlene while I went to Rainbow Centre (a special school) for an interview. We waited about 3 months for this interview; the administrative process was slow. Before the interview, we were told that we need to wait for 6mths to 1 year for available opening.
So imagine the surprise when I found out that Rainbow Centre has a vacancy for Charlene at the end of the month! It must be God's plan for Charlene to be enrolled in so soon. The weekly physio will be able to help Charlene develop her cognitive and motor functions. The school fees will be about $100 per month, still cheaper than our trip to KK physio.
Des took 1/2 day leave to care for Charlene while I went to Rainbow Centre (a special school) for an interview. We waited about 3 months for this interview; the administrative process was slow. Before the interview, we were told that we need to wait for 6mths to 1 year for available opening.
So imagine the surprise when I found out that Rainbow Centre has a vacancy for Charlene at the end of the month! It must be God's plan for Charlene to be enrolled in so soon. The weekly physio will be able to help Charlene develop her cognitive and motor functions. The school fees will be about $100 per month, still cheaper than our trip to KK physio.
Tuesday, September 14, 2010
14 Sep 10
14 Sep 10
Charlene kept whimpering and moaning throughout the past 2 days and nights. Des was very worried that she was in pain bec of the knock. We decided to get our family doctor to examine her head. The family doctor diagnosed it to be wind colic. He prescribed colic drops and said that it would go away in 1 or 2 days time.
My MIL was shagged out after carrying Charlene for the whole night. Managed to persuade her to go and rest in the day.
I prayed to God that He send us a helper to care for Charlene. Indeed, He responded by sending my mum over! She popped up without any warning. It was fortunate that she came as she helped out in the afternoon. Charlene was well behaved and we managed to complete all the feeding and physio exercises.
Charlene kept whimpering and moaning throughout the past 2 days and nights. Des was very worried that she was in pain bec of the knock. We decided to get our family doctor to examine her head. The family doctor diagnosed it to be wind colic. He prescribed colic drops and said that it would go away in 1 or 2 days time.
My MIL was shagged out after carrying Charlene for the whole night. Managed to persuade her to go and rest in the day.
I prayed to God that He send us a helper to care for Charlene. Indeed, He responded by sending my mum over! She popped up without any warning. It was fortunate that she came as she helped out in the afternoon. Charlene was well behaved and we managed to complete all the feeding and physio exercises.
Monday, September 13, 2010
13 Sep 10
13 Sep 10
I called up the neuro-nurse and updated her about Charlene's seizures condition. Got a scolding from her; she reminded me that the danger of not sending her to the hospital is that it will develop into status epileptic, and medication can no longer control the seizures. But she understand and empathized about our reluctance to send Charlene back so soon after her discharge.
I called up the neuro-nurse and updated her about Charlene's seizures condition. Got a scolding from her; she reminded me that the danger of not sending her to the hospital is that it will develop into status epileptic, and medication can no longer control the seizures. But she understand and empathized about our reluctance to send Charlene back so soon after her discharge.
Sunday, September 12, 2010
12 Sep 10
12 Sep 10
We decided not to go to church because Dez and I were still having diarrhoea and cough. Better that we don't spread the germs to our fellow brothers and sisters.
Finally able to bring Charlene for a hair-cut in the afternoon while she's awake. With the short hair-cut, Charlene really look like a pretty 'boy'! The short hair-cut should keep her cool... we noticed that she sweat less after the hair cut.
While carrying her in the evening, Des accidentally caused Charlene's head to knock on to the wooden sofa set. Charlene didn't respond to the knock and continued to sleep. Des was very concerned about the knock and felt very guilty.
Charlene's bio clock was inverted again. Charlene woke up at about 12 plus and refused to sleep. She kept crying and crying throughout the night. My FIL could not cope and had to seek backup support from my MIL. In the end my MIL didn't sleep the whole night.
We decided not to go to church because Dez and I were still having diarrhoea and cough. Better that we don't spread the germs to our fellow brothers and sisters.
Finally able to bring Charlene for a hair-cut in the afternoon while she's awake. With the short hair-cut, Charlene really look like a pretty 'boy'! The short hair-cut should keep her cool... we noticed that she sweat less after the hair cut.
While carrying her in the evening, Des accidentally caused Charlene's head to knock on to the wooden sofa set. Charlene didn't respond to the knock and continued to sleep. Des was very concerned about the knock and felt very guilty.
Charlene's bio clock was inverted again. Charlene woke up at about 12 plus and refused to sleep. She kept crying and crying throughout the night. My FIL could not cope and had to seek backup support from my MIL. In the end my MIL didn't sleep the whole night.
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| Pre hair-cut |
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| Post hair-cut |
Saturday, September 11, 2010
11 Sep 10
11 Sep 10
Today was a "very bad" day in terms of number of seizures episodes.
Charlene had 29 episodes altogether, with 3 clusters (defined as 3 and more within an hour). According to the nurse, we should have brought Charlene into hospital already, but we were very reluctant to do so, because she just came back home.
We also unsure what the doctors can do in the hospital... they probably would increase the medication and monitor her. Which could be done at home too. So why should we spend the money to go to the hospital? Dez's medisave had already been wiped out (5 yrs worth)... we don't want to go to the hospital unnecessarily.
After much discussion, we decide to increase topomax dosage to 5+5, which is within the neurologist guideline for us.
Lord, we commit Charlene in your hands. Please bless us with the wisdom and insight to know how to take care of Charlene.
Today was a "very bad" day in terms of number of seizures episodes.
Charlene had 29 episodes altogether, with 3 clusters (defined as 3 and more within an hour). According to the nurse, we should have brought Charlene into hospital already, but we were very reluctant to do so, because she just came back home.
We also unsure what the doctors can do in the hospital... they probably would increase the medication and monitor her. Which could be done at home too. So why should we spend the money to go to the hospital? Dez's medisave had already been wiped out (5 yrs worth)... we don't want to go to the hospital unnecessarily.
After much discussion, we decide to increase topomax dosage to 5+5, which is within the neurologist guideline for us.
Lord, we commit Charlene in your hands. Please bless us with the wisdom and insight to know how to take care of Charlene.
11 Sep 10
11 Sep 10
Today was a bad day. Charlene had many seizures episodes (29) that we were considering clusters x 3 (29 episodes altogether) very scary, almost wanted to send her to hospital. Decided to increase topomax to 5+5.
Today was a bad day. Charlene had many seizures episodes (29) that we were considering clusters x 3 (29 episodes altogether) very scary, almost wanted to send her to hospital. Decided to increase topomax to 5+5.
Friday, September 10, 2010
10 Sep 10
10 Sep 10
Charlene cough had gone away, with no more phlegmy sound. Not surprisingly, her vomiting had also got better. Thank God!
Charlene cough had gone away, with no more phlegmy sound. Not surprisingly, her vomiting had also got better. Thank God!
Thursday, September 9, 2010
Wednesday, September 8, 2010
8th Sept 10
8th Sept 10
Charlene had many visitors today. She was quite pleased to be carried by Aunty Milie. Good thing Milie's phone rang and saved her. When I carried Charlene, she started passing motion and I told the nurse to get some blue sheet. But before the nurse could get back, her shit was all over the floor. I went "Oh No!" and everyone was staring at me and I said "Shit!" and they all laughed.
Milie and Huanjie saw how Charlene immediately became unhappy once she got out of the bath tub.
Charlene was totally uncooperative with the physiotherapist and speech therapist. Even Milie thinks that she is doing it on purpose. Milie said she felt Charlene stiffened in her arms when I said the word "physio". In the first place, Charlene disliked exercises (except sitting) and now she probably associate (I hope she can do that!) physio with the suctioning.
Wendy and Winston came and prayed for Charlene too.
Thank you all (Ah Sang, Bernard & Christine, Wendy & Winston, Milie, Huanjie) who came to visit. We really appreciate your presence and your prayers for Charlene.
Charlene had many visitors today. She was quite pleased to be carried by Aunty Milie. Good thing Milie's phone rang and saved her. When I carried Charlene, she started passing motion and I told the nurse to get some blue sheet. But before the nurse could get back, her shit was all over the floor. I went "Oh No!" and everyone was staring at me and I said "Shit!" and they all laughed.
Milie and Huanjie saw how Charlene immediately became unhappy once she got out of the bath tub.
Charlene was totally uncooperative with the physiotherapist and speech therapist. Even Milie thinks that she is doing it on purpose. Milie said she felt Charlene stiffened in her arms when I said the word "physio". In the first place, Charlene disliked exercises (except sitting) and now she probably associate (I hope she can do that!) physio with the suctioning.
Wendy and Winston came and prayed for Charlene too.
Thank you all (Ah Sang, Bernard & Christine, Wendy & Winston, Milie, Huanjie) who came to visit. We really appreciate your presence and your prayers for Charlene.
Tuesday, September 7, 2010
3rd - 7th Sept 10
3rd - 7th Sept 10
The doctor wanted to send Charlene home on the 3rd cos based on their records she is doing well. But the truth is she was not maintaining her oxygen when she's asleep and I was quite concerned. Consistent deprivation of oxygen to her organs is not good at all. But ridiculously, she only needed 0.1% of oxygen. It reminded us of her then SCN neighbour who went home with oxygen tank cos the boy needed 0.1% of oxygen and couldn't be weaned off. For a few days, Charlene was like that. We were worried but we continued to pray and trust in God.
The most likely reason is that Charlene's upper airway; her nose and throat are still very blocked. And that's affecting her breathing and causing her not to maintain her oxygen. True enough, after the physio did the suction for her, she was able to maintain for a few hours.
We thanked God that Charlene's cough got better and her upper airway was more cleared and she maintained her oxygen levels.
However, we could not bring her home cos she started having very bad diarrhea (must have caught some infection in the ward).
Charlene's biological clock turned the other way again. She could not sleep probably due to the withdrawal of Kappra (her first anti-convulsant medication) at 12 midnight. We finally took Kappra totally off her after 3 months? But the frequency of her seizures are not stabilised yet. With hindsight, we got my mother in law to do the night shift with my father in law. And true enough, our naughty girl was awake throughout the night and demanded to be carried by her granny.
My parents in law claimed that they saw Charlene turn!
The doctor wanted to send Charlene home on the 3rd cos based on their records she is doing well. But the truth is she was not maintaining her oxygen when she's asleep and I was quite concerned. Consistent deprivation of oxygen to her organs is not good at all. But ridiculously, she only needed 0.1% of oxygen. It reminded us of her then SCN neighbour who went home with oxygen tank cos the boy needed 0.1% of oxygen and couldn't be weaned off. For a few days, Charlene was like that. We were worried but we continued to pray and trust in God.
The most likely reason is that Charlene's upper airway; her nose and throat are still very blocked. And that's affecting her breathing and causing her not to maintain her oxygen. True enough, after the physio did the suction for her, she was able to maintain for a few hours.
We thanked God that Charlene's cough got better and her upper airway was more cleared and she maintained her oxygen levels.
However, we could not bring her home cos she started having very bad diarrhea (must have caught some infection in the ward).
Charlene's biological clock turned the other way again. She could not sleep probably due to the withdrawal of Kappra (her first anti-convulsant medication) at 12 midnight. We finally took Kappra totally off her after 3 months? But the frequency of her seizures are not stabilised yet. With hindsight, we got my mother in law to do the night shift with my father in law. And true enough, our naughty girl was awake throughout the night and demanded to be carried by her granny.
My parents in law claimed that they saw Charlene turn!
Thursday, September 2, 2010
2nd Sept 10
2nd Sept 10
After 2 days of chest physiotherapy, Charlene's cough is better and she has less phlegm. I have never thought that patting her and doing suction is so powerful and useful. The allied health workers (physiotherapist, occupational therapist, speech therapist, dietician) has been of great help to Charlene in her development.
The Home Care nurse was very nice and kept popping by to check on Charlene's button. She helped us source for some items we needed as well.
Thank God for these helpful people. We will fix our eyes upon HIM for Charlene's healing.
After 2 days of chest physiotherapy, Charlene's cough is better and she has less phlegm. I have never thought that patting her and doing suction is so powerful and useful. The allied health workers (physiotherapist, occupational therapist, speech therapist, dietician) has been of great help to Charlene in her development.
The Home Care nurse was very nice and kept popping by to check on Charlene's button. She helped us source for some items we needed as well.
Thank God for these helpful people. We will fix our eyes upon HIM for Charlene's healing.
Tuesday, August 31, 2010
31 Aug 10
31 Aug 10
Charlene is in a bad mood. She has a couple of fits, some silent ones. Many people came to disturb Charlene; doctors, therapists and dietician.
The geneticist came and said that perhaps a more detailed choromosome test could be done. But it would cost US$1500. Alternatively, we could take part in a research study conducted in Singapore but must wait for months for the results. She left saying that "Charlene is a mystery and Charlene surprises us".
The surgeon was shocked to see Charlene so chubby and said that her weight gain is sufficient and she shouldn't be drinking more milk cos she is not using up so much energy. The dietician also said that Charlene's growth is on target and she is growing well. Praise the Lord!
Charlene's cough is still phlegmy. I went after the ward consultant and got some new information on why Charlene had so much phlegm. One possible reason was that Charlene was on the respirator for a long time (one month) and hence her lungs her more easily inflammed.
I read something good from the Daily Remembrance that Ah Sang gave us.
"God delivered David from horrible pit; Jeremiah from dungeon, Daniel from lions, Peter from waves and Paul from the forty Jews."
The Lord is good, a stronghold in the day of trouble and He knoweth them that trust in HIM.
He will renew our strength, illumine our path.
Let us wait for HIM in faith, look for HIM in hope and plead with HIM to work in us all the good pleasure of HIS will.
Charlene is in a bad mood. She has a couple of fits, some silent ones. Many people came to disturb Charlene; doctors, therapists and dietician.
The geneticist came and said that perhaps a more detailed choromosome test could be done. But it would cost US$1500. Alternatively, we could take part in a research study conducted in Singapore but must wait for months for the results. She left saying that "Charlene is a mystery and Charlene surprises us".
The surgeon was shocked to see Charlene so chubby and said that her weight gain is sufficient and she shouldn't be drinking more milk cos she is not using up so much energy. The dietician also said that Charlene's growth is on target and she is growing well. Praise the Lord!
Charlene's cough is still phlegmy. I went after the ward consultant and got some new information on why Charlene had so much phlegm. One possible reason was that Charlene was on the respirator for a long time (one month) and hence her lungs her more easily inflammed.
I read something good from the Daily Remembrance that Ah Sang gave us.
"God delivered David from horrible pit; Jeremiah from dungeon, Daniel from lions, Peter from waves and Paul from the forty Jews."
The Lord is good, a stronghold in the day of trouble and He knoweth them that trust in HIM.
He will renew our strength, illumine our path.
Let us wait for HIM in faith, look for HIM in hope and plead with HIM to work in us all the good pleasure of HIS will.
Monday, August 30, 2010
30 Aug 10
30 Aug 10
The senior doctor in the ward suddenly saw Charlene's chest X-ray (after a few days) and thought that her heart looked bigger than normal. Charlene was sent for a 2-D heart scan. It was dejavu for me. Not too long ago, they sent her for kidneys ultrasound. I prayed a silent prayer for Charlene as the radiologist went about doing the scan. The expression on the radiologist tells me that something is not too good.
The cardiologist came into the room and took over the procedure. He looked at me and said "Oh, Charlene has grown so big, I recognised her heart!" He disagreed with the radiologist and said that Charlene's heart size is normal. Praise the Lord! And the little hole in Charlene's heart (which most premature babies have) has closed!
However, there's something that might be of concern. Charlene's heart muscle (the one in the middle) is mildly thick. Normal size is 55mm but hers is 56mm. The cardiologist said it's not a big deal but to be safe, they will continue to monitor Charlene. I asked for the cause and he said most likely genetics. I told him the geneticist found nothing that could account for Charlene's fits and gave us open date. The cardio doctor then said he will get the geneticist to relook. He even hypothesized that perhaps some deposits is causing Charlene's heart muscle to thicken and perhaps the same deposits in the brain caused seizures.
Haha, Dez and I have given up on finding the cause for Charlene's condition but if this may shed some light and hence helped in Charlene's treatment, we will gladly accept it.
Lord Jesus, everything is in your hands!
The senior doctor in the ward suddenly saw Charlene's chest X-ray (after a few days) and thought that her heart looked bigger than normal. Charlene was sent for a 2-D heart scan. It was dejavu for me. Not too long ago, they sent her for kidneys ultrasound. I prayed a silent prayer for Charlene as the radiologist went about doing the scan. The expression on the radiologist tells me that something is not too good.
The cardiologist came into the room and took over the procedure. He looked at me and said "Oh, Charlene has grown so big, I recognised her heart!" He disagreed with the radiologist and said that Charlene's heart size is normal. Praise the Lord! And the little hole in Charlene's heart (which most premature babies have) has closed!
However, there's something that might be of concern. Charlene's heart muscle (the one in the middle) is mildly thick. Normal size is 55mm but hers is 56mm. The cardiologist said it's not a big deal but to be safe, they will continue to monitor Charlene. I asked for the cause and he said most likely genetics. I told him the geneticist found nothing that could account for Charlene's fits and gave us open date. The cardio doctor then said he will get the geneticist to relook. He even hypothesized that perhaps some deposits is causing Charlene's heart muscle to thicken and perhaps the same deposits in the brain caused seizures.
Haha, Dez and I have given up on finding the cause for Charlene's condition but if this may shed some light and hence helped in Charlene's treatment, we will gladly accept it.
Lord Jesus, everything is in your hands!
Sunday, August 29, 2010
28 Aug 10
28 Aug 10
After crying the whole day yesterday, Charlene slept through today. She was not awake but she coughed and cried at times.
Her left foot with the IV plug was slightly swollen and the doctor has to remove it and re-insert another plug. However, after 2 doctors tried 3 times, they gave up. They said that Charlene is too chubby and it was too difficult to find her veins. Since no IV plug, they couldn't drip her and have to resume her milk intake to full feeds.
Thank God that Charlene was able to retain her milk and did not vomit.
Lord, we pray that Charlene's cough will go away. Thank you Lord Jesus for the amazing things you have done for Charlene.
After crying the whole day yesterday, Charlene slept through today. She was not awake but she coughed and cried at times.
Her left foot with the IV plug was slightly swollen and the doctor has to remove it and re-insert another plug. However, after 2 doctors tried 3 times, they gave up. They said that Charlene is too chubby and it was too difficult to find her veins. Since no IV plug, they couldn't drip her and have to resume her milk intake to full feeds.
Thank God that Charlene was able to retain her milk and did not vomit.
Lord, we pray that Charlene's cough will go away. Thank you Lord Jesus for the amazing things you have done for Charlene.
27 Aug 10
27 Aug 10
Praise the Lord! Though Charlene is sick, her fits did not increase. Conversely, they were reduced significantly. From double digit (12-15) to now single digit (5-7) daily.
Charlene's fever has come down but she is still coughing very badly. She coughed so forcefully that she puke out her milk and her button starts leaking horrendously. She kept crying pitifully the whole day. She was either upset cos she is unwell and couldn't cough out the phlegm or she wants to be carried.
The doctor halved her milk intake as they were worried that she would keep vomiting and may aspirate.
Praise the Lord! Though Charlene is sick, her fits did not increase. Conversely, they were reduced significantly. From double digit (12-15) to now single digit (5-7) daily.
Charlene's fever has come down but she is still coughing very badly. She coughed so forcefully that she puke out her milk and her button starts leaking horrendously. She kept crying pitifully the whole day. She was either upset cos she is unwell and couldn't cough out the phlegm or she wants to be carried.
The doctor halved her milk intake as they were worried that she would keep vomiting and may aspirate.
Thursday, August 26, 2010
26 Aug 10
26 Aug 10
Charlene is running a fever and cough. On the advice of the pediatrician, we decided to send Charlene into A&E. Our main concern is pneumonia and dehydration.
The doctor at A&E thinks that she is a little dehydrated and she was admitted (we already expected that due to her complex medical condition). At the ward, her fever went up to 39 degrees. I kept sponging her throughout the night.
What was amazing was that despite her fever going up, the fits were not increasing or clustering (which should be the case). On the converse, it was reducing. Thank God for His grace!
Charlene is running a fever and cough. On the advice of the pediatrician, we decided to send Charlene into A&E. Our main concern is pneumonia and dehydration.
The doctor at A&E thinks that she is a little dehydrated and she was admitted (we already expected that due to her complex medical condition). At the ward, her fever went up to 39 degrees. I kept sponging her throughout the night.
What was amazing was that despite her fever going up, the fits were not increasing or clustering (which should be the case). On the converse, it was reducing. Thank God for His grace!
Tuesday, August 24, 2010
24 Aug 10
24 Aug 10
The fussy Charlene is back. She wants to be carried the whole day whenever shes' awake. Dez and I are not sure whether we should be happy or sad that the fusspot Charlene is back. On one hand, she's more awake and is interacting with us through her fusspot cries. On the other, I will be more tired.
The seizures pattern have changed again... Now the seizures happened when she wakes up. At least she's able to fall asleep. The neurologist called back and suggest us to reverse the dosage of Topomax to 4+3 (4ml in morning, 3ml at night).
The fussy Charlene is back. She wants to be carried the whole day whenever shes' awake. Dez and I are not sure whether we should be happy or sad that the fusspot Charlene is back. On one hand, she's more awake and is interacting with us through her fusspot cries. On the other, I will be more tired.
The seizures pattern have changed again... Now the seizures happened when she wakes up. At least she's able to fall asleep. The neurologist called back and suggest us to reverse the dosage of Topomax to 4+3 (4ml in morning, 3ml at night).
Monday, August 23, 2010
23 Aug 10
23 Aug 10
Today is a good day. Charlene slept well in the afternoon and she was awake to play with us in the evening. It's great to see her expressing her emotions - she had some reactions when we made her smell different food (samba sotong, chicken rice, chicken cutlet) and touch different things. She got upset when her Daddy waved Magnum Ice-cream in front of her, as if in protest; she stopped when her Daddy left the room. We hope these actions will stimulate her development.
Bible verse for Charlene today:-
Hebrews 10:23.
Let us hold unswervingly to the hope we profess, for He who promised is faithful.
Today is a good day. Charlene slept well in the afternoon and she was awake to play with us in the evening. It's great to see her expressing her emotions - she had some reactions when we made her smell different food (samba sotong, chicken rice, chicken cutlet) and touch different things. She got upset when her Daddy waved Magnum Ice-cream in front of her, as if in protest; she stopped when her Daddy left the room. We hope these actions will stimulate her development.
Bible verse for Charlene today:-
Hebrews 10:23.
Let us hold unswervingly to the hope we profess, for He who promised is faithful.
Sunday, August 22, 2010
22 Aug 10
22 Aug 10
Was having breakfast when somehow this verse came into my mind.
Daniel 3:17-18, which spoke about Daniel's friends faithful response to Nebuchadnezzar the King (who ordered them to worship his image of gold)
If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O King. But even if He does not, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up.
We decided to separate Topomax and Phenobarbitone because we suspect that there's may be drug interactions. It seems to work as Charlene was able to fall asleep more easily.
Was having breakfast when somehow this verse came into my mind.
Daniel 3:17-18, which spoke about Daniel's friends faithful response to Nebuchadnezzar the King (who ordered them to worship his image of gold)
If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O King. But even if He does not, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up.
We decided to separate Topomax and Phenobarbitone because we suspect that there's may be drug interactions. It seems to work as Charlene was able to fall asleep more easily.
Saturday, August 21, 2010
21 Aug 10
21 Aug 10
The day went badly, with Charlene having >20 seizures. We didn't know what to do. Sending her to the hospital is not useful at all, cos they will only pump in more medications to knock her out. We have been updating the neurologist through his staff nurse, and so far, they told us to keep monitoring.
Oh merciful Lord, please lay your healing hands upon Charlene.
We decided to read a different Bible verse to Charlene everyday. We hope that through that Charlene will hear God's word and be strengthened by it.
Today's verse is from Joshua 1:9.
"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go".
The day went badly, with Charlene having >20 seizures. We didn't know what to do. Sending her to the hospital is not useful at all, cos they will only pump in more medications to knock her out. We have been updating the neurologist through his staff nurse, and so far, they told us to keep monitoring.
Oh merciful Lord, please lay your healing hands upon Charlene.
We decided to read a different Bible verse to Charlene everyday. We hope that through that Charlene will hear God's word and be strengthened by it.
Today's verse is from Joshua 1:9.
"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go".
Friday, August 20, 2010
20 Aug 10
20 Aug 10
Thank God that Charlene slept soundly throughout the night and only had seizures at 5am.
I smsed the pediatrician with regards to Charlene's choking. It must be God's grace for me to bump into her at KKH Macdonald and her giving us her hp no. It was really nice and she replied to all my sms queries even after office hours.
Thank God that Charlene slept soundly throughout the night and only had seizures at 5am.
I smsed the pediatrician with regards to Charlene's choking. It must be God's grace for me to bump into her at KKH Macdonald and her giving us her hp no. It was really nice and she replied to all my sms queries even after office hours.
Thursday, August 19, 2010
19 Aug 10
19 Aug 10
Charlene's condition was not too good today. She had clustering - 3 seizures within an hour. But thank God that after I prayed earnestly, she fell asleep at 430pm.
One scary thing happened after she fell asleep. She choked in her sleep and turned purplish. I immediately put her down and patted her back. Some saliva came out from her mouth, and I heard those blockage sound coming from her throat. I immediately did a suction and more phlegmy stuff came out. Charlene looked better after that.
Charlene's condition was not too good today. She had clustering - 3 seizures within an hour. But thank God that after I prayed earnestly, she fell asleep at 430pm.
One scary thing happened after she fell asleep. She choked in her sleep and turned purplish. I immediately put her down and patted her back. Some saliva came out from her mouth, and I heard those blockage sound coming from her throat. I immediately did a suction and more phlegmy stuff came out. Charlene looked better after that.
Wednesday, August 18, 2010
18 Aug 10
18 Aug 10
I received a sms from a friend early in the morning to know about the proposal & engagement. Was really, really happy that I'm one of the first few to know about the engagement. It goes to show that someone still remember me. =)
Charlene's seizures patterns had changed... now, she almost certainly go into it after she fell asleep. Consequently, she had very little sleep and looked very tired.
Charlene had seizures every hour during 5 - 8 am. I prayed to the Lord to break the trend, and my prayer was answered immediately. Charlene was awake from 8+ - 12pm with no seizures. Thank You Lord Jesus!
Read something in the Daily Bread that I want to remember:-
"When we claim one of God's promises in the Bible, we place ourselves in His hands and on His schedule. As we wait, it may at times seem as if the Lord has forgotten us. But trust embraces the reality that when we stand on a promise of God, He remains faithful.
The assurance is in our hearts, and the timing is in His hands."
I received a sms from a friend early in the morning to know about the proposal & engagement. Was really, really happy that I'm one of the first few to know about the engagement. It goes to show that someone still remember me. =)
Charlene's seizures patterns had changed... now, she almost certainly go into it after she fell asleep. Consequently, she had very little sleep and looked very tired.
Charlene had seizures every hour during 5 - 8 am. I prayed to the Lord to break the trend, and my prayer was answered immediately. Charlene was awake from 8+ - 12pm with no seizures. Thank You Lord Jesus!
Read something in the Daily Bread that I want to remember:-
"When we claim one of God's promises in the Bible, we place ourselves in His hands and on His schedule. As we wait, it may at times seem as if the Lord has forgotten us. But trust embraces the reality that when we stand on a promise of God, He remains faithful.
The assurance is in our hearts, and the timing is in His hands."
Monday, August 16, 2010
16 Aug 2010
Charlene was able to puke out 2 clumps of phlegm soon in the middle of milk feeding. This is a significant improvement because it shows that she was able to control her sphincter muscles to prevent from vomiting the milk. Just a few months back, we were worried about the reflux and constant vomiting, but its obvious that Charlene has already went past that stage.
The Lord is good! He has answered our initial prayers (see our prayer list on blog right)! His way is above our ways and though we might not see instant changes, His grace is certain and sure.
Though Charlene's seizures have been creeping upwards, from once per 2 hours to once per hour, we will keep faith in the Lord.
Friends, please help us in praying that Charlene's seizures be kept under control and return to the previous baseline (avg 2 per day) with the current level of medication.
(Charlene in her new sleeveless T-shirt, courtesy of Auntie Wanfen, Audrey and Jiayu)
Saturday, August 14, 2010
14 Aug 10
Our SWAPS friends came over to visit Charlene and bought lots of new clothes for Charlene. Now Charlene has lotsa new clothes.
In fact, she has more clothes than toys now. Which is just as well, since Charlene don't really play around with toys. But she changed her clothes a lot, cos of vomitting.
In fact, she has more clothes than toys now. Which is just as well, since Charlene don't really play around with toys. But she changed her clothes a lot, cos of vomitting.
Monday, August 9, 2010
9 Aug 10
We brought Charlene to a brother-in-Christ, Ah Sang's (refer to 4 Nov 09 post) home on National Day.
We chit-chatted and updated them on Charlene's condition. Ah Sang's wife shared some stories about her difficulties in taking care of Wei Yang during his rehab and we can tell how much she went through. She was able to go through the tough time by drawing strength from the Lord.
Though we were only there for an hour and a half, it was very good sharing. Bec Ah Sang's family went through a similar ordeal, they could understand our difficulties much better than others.
Lord, may You bless Ah Sang and his family with health and recovery. May You bless Wei Yang and protect him from the seizures. They are a Christian family which we would like to model ourselves to; strong in faith despite the difficulties and exemplifying God's Word in 2 Corinthians 12:9.
"My grace is sufficient for you, for My power is make perfect in weakness" - 2 Corinthians 12:9.
We chit-chatted and updated them on Charlene's condition. Ah Sang's wife shared some stories about her difficulties in taking care of Wei Yang during his rehab and we can tell how much she went through. She was able to go through the tough time by drawing strength from the Lord.
Though we were only there for an hour and a half, it was very good sharing. Bec Ah Sang's family went through a similar ordeal, they could understand our difficulties much better than others.
Lord, may You bless Ah Sang and his family with health and recovery. May You bless Wei Yang and protect him from the seizures. They are a Christian family which we would like to model ourselves to; strong in faith despite the difficulties and exemplifying God's Word in 2 Corinthians 12:9.
"My grace is sufficient for you, for My power is make perfect in weakness" - 2 Corinthians 12:9.
Sunday, August 8, 2010
8 Aug 10
We thank God for answering our prayers!
Charlene's biological clock reverted back. She wakes up in the day and sleeps at night.
The number of seizures she has is still around 12 daily. However, the statistics for this week might totally not be useful as Charlene has continuously puked out her morning medicine 6 days in a row. The very first time it happened, Dez said that she is doing it on purpose cos she knows what it is and don't like it. For the 1st few days, I thought it could be that she was having some digestion problems. Then yesterday morning, I split the medicine up, only fed 4 instead of 6 thus reducing the volume from 19ml to 11 ml. Yet, an hour after the medicine, Charlene puked it out and the force she exerted while vomiting also caused the medicine to leak out of her button. I am sure that she did it on purpose. Anyway, cos I split up the medicine, at least the new anti-convulsant medicine is not being puked out.
I saw Charlene smile (on 6 Aug))! She was in good mood as she sat in the car seat happily and smiled at her maternal grandma who was playing with her. I am also thankful to God that she drank water from the spoon and had infant brown cereal.
We also thanked our friends who came to visit Charlene and for their generosity. We also thanked God for sending brothers and sisters to teach us how to better pray for Charlene's healing.
Charlene's biological clock reverted back. She wakes up in the day and sleeps at night.
The number of seizures she has is still around 12 daily. However, the statistics for this week might totally not be useful as Charlene has continuously puked out her morning medicine 6 days in a row. The very first time it happened, Dez said that she is doing it on purpose cos she knows what it is and don't like it. For the 1st few days, I thought it could be that she was having some digestion problems. Then yesterday morning, I split the medicine up, only fed 4 instead of 6 thus reducing the volume from 19ml to 11 ml. Yet, an hour after the medicine, Charlene puked it out and the force she exerted while vomiting also caused the medicine to leak out of her button. I am sure that she did it on purpose. Anyway, cos I split up the medicine, at least the new anti-convulsant medicine is not being puked out.
I saw Charlene smile (on 6 Aug))! She was in good mood as she sat in the car seat happily and smiled at her maternal grandma who was playing with her. I am also thankful to God that she drank water from the spoon and had infant brown cereal.
We also thanked our friends who came to visit Charlene and for their generosity. We also thanked God for sending brothers and sisters to teach us how to better pray for Charlene's healing.
(charlene pouting)
(charlene smiling to grandma. the best picture i could get for her blink-&-you-miss smile)
Tuesday, August 3, 2010
3 Aug 10
Since Topomax was added last Friday (30 July) till now, the number of seizures has reduced but it is still at double digit (11-13). We will probably wait another 2 days to decide if we want to increase the dosage.
Sunday, August 1, 2010
1 Aug 10
From today till Nov, Yishun 10 cinema is undergoing renovation and our church has to shift to Econ Building (in Yio Chu Kang) for the interim period.
As the air-con was not strong enough, Charlene started crying half-way through the worship session and we had to carry her out. Feeding her was also another challenge as we tried to minimize the probability of her vomiting by breaking up the feeding into 2 parts.
Lord, despite the obstacles, we pray that You will provide and that we can continue to praise and worship You and move together with our church.
As the air-con was not strong enough, Charlene started crying half-way through the worship session and we had to carry her out. Feeding her was also another challenge as we tried to minimize the probability of her vomiting by breaking up the feeding into 2 parts.
Lord, despite the obstacles, we pray that You will provide and that we can continue to praise and worship You and move together with our church.
30 July 10
Charlene's neurologist called me in the morning and advised me on the next course of action. Basically, the long term plan is still to take Kappra off for good (since she is only on it once a day for 0.6 ml). For now, to keep the seizures under control and back to the baseline (equilibrium), increase dosage of Topomax (which is the 4th medication that was recently added in June).
So, I increased the dosage of Topomax by 1ml at night.
Tonight, we went to Charlene's friend 1 year old birthday party. The girl and Charlene used to be neighbours in NICU. Am glad to have contact with parents who have children of other chronic conditions. Cos only they truly understand the difficulties and the heart pain of seeing your own child suffer.
So, I increased the dosage of Topomax by 1ml at night.
Tonight, we went to Charlene's friend 1 year old birthday party. The girl and Charlene used to be neighbours in NICU. Am glad to have contact with parents who have children of other chronic conditions. Cos only they truly understand the difficulties and the heart pain of seeing your own child suffer.
Saturday, July 31, 2010
Sleeping postures of Charlene
Various cute/interesting photos of Charlene. Note that these photos capture Charlene's natural sleeping postures; we did not move her in anyway.
Putting up a poll to see which photos you like the best!
Putting up a poll to see which photos you like the best!
Photo 1
Photo 2
Photo 3
Photo 4
Photo 5
Photo 6
Photo 7
Photo 8
(the pillows were placed there to keep her heads up...)
Photo 9
Photo 10
Photo 11
Photo 12
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